Sticky Blood-Hughes Syndrome Support

Saying update

Hello everyone,

It has been 6 months now since surgery, the five incision took a very long time to heal. Ended up having shingles twice during the six months and staff in the incision. My body simply does not heal quickly on any level. However I feel significantly better since the removal of the blood cysts/mass's and the full hysterectomy.

My joints continue to seize up often, early morning and at night mostly or if I over do which I tend to do considering I love my work and have high energy dogs. Currently I have been logging all my food and hydration daily. I truly feel better without gluten and with ample hydration. I drink yerba matte which helps with circulation and gives me energy as well. The fatigue some day's are difficult yet I am learning to embrace slowing down when it is needed.

Lifestyle choices have changed since the PE and DVT and the last two major surgeries. I am 47 and in good overall health, so to slow down has been a two year battle for me yet I am learning if I eat exactly right and drink significant water and the right kind of teas, and slow down my body runs better and pain is simply better to manage.

I am scheduled for a new rheumatologist this next month as the joint pain and seizing of the joints are difficult no matter. I use a cane sometimes when my balance and joints are being naughty. I wear my compression socks and planter fascititis socks daily. I noticed on the forum that so many of us have joint pain and seizing along with the heel pain/fractures. My question for the day is, does APS progress into other diseases? It seems even though I am well managed and have a self testing machine which I use successfully and keep a consistent INR between 3.5 and 4 in order to feel my best at this level.

I was diagnosed with Lupus non specific yet really do not understand this entirely? The RA doctor said I am fine and do not have anything needed of medication for the significant joint pain and seizing yet my body says otherwise. The pain, swelling and imbolitiy of my legs, ankles, feet and overall joints is so painful. I take "body breaks" and elevate and rest to help it along yet the pain is not fun on any level.

It is frustrating when my body feels and performs differently then when the Rheumatologist says after blood tests say no lupus, just symptomatic lupus. What does that really mean and does it progress into other health barriers before doctors can detect? It just does not seem normal to me with me being overall healthy and consistent INR along with being on 7.5 ml of Warfarin daily with a great diet and happy lifestyle.

Thanks for any ideas or input. This forum has helped me so much by having support from those that understand and who drive the same ship as I.


14 Replies

Thanks for the update and glad to hear things went well. Are you on Plaquenil? If not this is standard treatment for both Lupus and APS and would help with the fatigue and pain although it can take a while to kick in.

Also make sure your thyroid is ok ask for a full thyroid panel not just the TSH which is useless! Also Vit D and ferritin levels as well as B12 should all be in the higher levels not just "in"range.

Hope that helps.


Thank you this helps very much as I will request this when I go in. No they will not put me on Plaquenil, the specialist in OHSU in Portland was going to give me the prescription then forgot and when I traveled home three hours away at my pharmacy it was not there. My local GP and RA doctor said no to it and will not prescribe it, my eyes have been effected from the APS, so this seems to be why so far.

What can I do to help my ferritin levels? do you know? Diet?

Thank you again


You may like to know that Prof Hughes does not think that the low dose of 200mg per day of Plaquenil is a worry to the eyes and does not think that eyes even need to be checked. I would call the Dr at OHSU and see if he will send the script again.

Also look on the Hughes Syndrome website for information on this drug to supply to your local GP.


Hello Becca,

So nice to hear from you.

You have had surgery and I do not know if our antibodies like that so much. It will take time and probably you must allow yourself to rest a little more. Glad that the surgery was successful and that you feel better after it.

I guess you have done the bloodtests for Thyroid, Calcium, D-vit, Ferritin, B12 etc.

I also guess you use very good and comfortable shoes. This is what I can think of at present but you know that I am not medical trained. I only have APS.

I now wish you the very best!

Hugs from Kerstin

1 like

Youre the best Kerstin, always so good to hear from you. I'm doing much better, just working to get on top of it to stay healthy for years to come. I newly married 2 years ago, my husband proposed to me when I was at my sickest and in hospital after India missions. So God has blessed me with such an amazing man and would like to love him for a long long time. Hoping to stay proactive so the progressiveness is something I am watching closely. I was told that people can develop cancers after being diagnosed with APS and with the mass's being what they were before they removed them I am asking lots of questions in hopes of finding treatment and staying theraputic away from more PE, TIA and DVT/s The weight is slowly coming off as I have put 30 pound on since the leg gave out. I'm not used to being heavy and for me this is heavy. Lots of scar tissue in my right lung after the PE. Does anyone understand the lasting barriers after a PE? I am constantly out of breath, not sure if the scar tissue is causing it. This last year the doctors have put me on two inhalers now that I am instructed to use daily and have to have nebulizer treatments periodically...weird to me beings I do not have a history of allergies and now have been diagnosed with Asthma.



How wonderful that you live in love!

Have they done an Ecocardiography and do you have high bloodpressure?

You know Becca that we always speak of how important it is to have an APS-Specialist who knows to look for the right things.

I have been told over 10 years ago from a "famous" Rheumatologist here in Stockholm that cancer in not common when we have APS.



Thanks for the encouragement, so good to hear

Yes, I agree, I thought of coming to London to the Hughes Clinic just to have a quality provider check my health out. My husband and I both discussed a long layover strategically planned on one of our trips back to India, as London is one of the chosen layovers.

Regardless, yes having someone that knows is the right way, unfortunately there is not much knowledge here.

They have scheduled an Ecocardiography just recently. As I also have heart flutters. There is discovery process starting for all of this. Weird that you would ask about my blood pressure, as I have always always had low blood pressure and recently it continues to be high and this is not common for me....

1 like

I also had low bloodpressure which suddenly when I got my APS became was very high 10 years ago.

After warfarin and very precise and useful heart/bloodpressuredrugs my bloodpressure is normal and the Pulmonary Hypertension obviosly also have calmed down. I am never breathless what the cardiologist always ask if I am. It is also important to keep the bloodpressure down when you are on warfarin. I have 4 different drugs for this. They do an Ecocardiography with doppler every year.



Hi there glad to hear your news, you sound like you are handling it all admirably. If you are intending to book London/Prof H etc, you must book well in advance as he is booked full time months in advance. MaryF

1 like

Thank you Mary

Booking with him is only a thought at the moment

I found there is a specialist w/APS in North Carolina at Duke University in US


1 like

becca, can you tell me the name of this specialist at Duke? I am not far from there, and looking for a specialist to see,





Glad to read your update but am sad at the continuing struggles. Your attitude is inspiring. I'm still praying for you. ..Dan


Hello Dan, so good to see you on here.

How are you doing is the question?

Last I heard you were exercising and working on feeling better with a few set backs?? Thank you for the prayers ditto on that for you too

It is always always so positive coming onto the forum, I miss the support here when I lay off for awhile on it.

Nice to check back and touch base, literally inspires me also.

Have the best day ever in Ptown...I hear there is a flush of "tiny house" living going on there. Very interesting stuff...will be visiting Ptown soon this summer to check on a few of my studentts

Will have to have that coffee ok?

Talk to you soon



Becca, breathlessness could be a side effect of the PE scars or just low use of lungs while immobile. When hospitalised I had to have physio on my lungs every day.

It could also be iron deficient anaemia, but I'd have thought they would have checked for that? During my recovery post surgery, I took a while to get back to almost normal. I found doing normal things at a low level and light pace helped me to improve back then - gentle walks, as far as is practical, then very short dog walks, then a bit further etc.

Hope you can get to the bottom of it, your attitude is great. I too feel incredibly lucky to be with my wife, she is (over used phrase, but here goes...) my rock and has been fantastic in helping me and getting back on track.


You may also like...